ECT – Wendy’s Story

I want my story to serve as a warning to anyone who is considering ECT. I understand what it’s like to live with severe depression and to feel like you have run out of options.

I was at that point, and I was desperate enough to subject myself to ECT. My desperation and my depression clouded my judgment and led me to believe my doctors and the positive stories I had read about ECT.

I believed my doctors when they told me that ECT was perfectly safe and that it never causes permanent memory loss. Please don’t fall into that trap. I have brain damage now, and I will probably never get my precious memories back. 

But I hope that by sharing my story, I can prevent other people from suffering the profound loss that I have to live with. 

Your doctor may tell you that it’s rare to have memory loss extending beyond a few months before the treatment.

I don’t think it’s anywhere near as rare as they claim. I am one of the supposedly “rare” cases. ECT wiped out DECADES of my memory. My ENTIRE LIFE has been almost completely erased. That is not an exaggeration.

Before ECT, I had vivid memories of my childhood. Now, I only have very vague memories of my childhood.

After that, my whole life, starting in my teenage years and extending all the way through the end of my ECT “treatments,” is pretty much a completely blank slate.

I have a few random memories here and there, just little bits and pieces, but that’s it. I don’t remember most of the time I’ve spent with my wonderful husband, who I’ve been with for 13 years. 

I barely even remember my own mother, who passed away 12 years ago. It has been devastating for me.

I am extremely lucky that I have been able to keep my job.

 I know a lot of people have lost their jobs after ECT because the memory loss and cognitive impairment made it impossible for them to be able to do their job anymore.

In my case, after ECT, I still remembered the basics of how to do my job.

 I think this is because I returned to work immediately after my initial series of ECT, and I continued to work while I was receiving “maintenance treatments.” 

However, I did forget the details of how to do many of my job functions, so I basically had to relearn a lot of things. I am fortunate to have a supportive boss who has been patient and accommodating with me.

And, to add insult to injury, the ECT ultimately didn’t even work. It seemed to work extremely well at first, giving me complete remission of my depression. 

But the antidepressant effect only lasted for a short period of time, so I kept having to get more and more treatments to maintain the effects. I was okay with that at first, because even though the effect wore off quickly, I was able to maintain full remission from my depression as long as I kept getting a treatment every 2-3 weeks to prevent a relapse. 

I had been dealing with severe treatment-resistant depression for 7 years before this, so being able to feel completely well and like my normal self for an extended time period was like a miracle to me.

 At first, I didn’t notice any significant memory loss. But after continuing to get “maintenance treatments” for a while, one day after a treatment I looked at a picture of me and my husband on our honeymoon in Ireland back in 2009 and realized I didn’t remember our trip at all. It was the most horrible feeling. 

I thought about my life with my husband, trying to figure out what other memories I had lost, and I found that I couldn’t remember ANYTHING from the entire 12 years I had been with my husband. It was literally like my life had been erased. I tried to think back farther than that, and the last thing I could remember was about 20 years ago. 

I was in shock. When I started the ECT, I thought I would be able to stop if I started to notice any significant memory loss. I had no idea that such a huge amount of memory loss could happen so suddenly. 

You would think that I would have stopped getting the ECT then and there, but I was convinced there was nothing else that would effectively treat my severe, “treatment-resistant” depression. 

I had taken just about every medication there is, and they either didn’t work at all or only worked for a few months. As bad as my memory loss was, I still felt like it was better than living with severe depression, which was disabling at times. 

 And for some reason, I thought it couldn’t get any worse. I kept telling myself, the damage has already been done.

 The memory loss happened after I tried to extend my treatments farther apart and suffered a major relapse that didn’t respond to my next treatment.

I ended up requiring another series of treatments just like the initial treatment series, three times a week for two weeks, to get me back into remission.

 So I thought the memory loss had occurred because I had to get a third series of three-day-a-week ECT’s. (My initial course of treatments was a series of 12 treatments, three days a week for four weeks. 

Then I had to undergo a second series of treatments a few weeks after completing my first series because my doctor had tried to space out my treatments too quickly and I relapsed). 

I thought it was just too much for my brain to handle. Because I hadn’t experienced any significant memory loss before that, I figured that as long as I was able to keep the treatments at least two weeks apart, I wouldn’t suffer any further memory loss.

I couldn’t have been more wrong. 

Looking back at it now, I can’t believe I agreed to subject myself to such an excessive number of treatments, but at the time, I trusted my doctors. I was so incredibly happy to be free from depression, and I just wasn’t willing to give that up. I kept telling myself that losing my memory was better than being severely depressed and disabled. 

So I continued with my “maintenance” ECT for another year. (From start to finish, I subjected myself to ECT for a year and a half), and my memory loss ended up getting much, much worse. 

It got to the point that every ECT was erasing my memory of everything that had happened since my last ECT. 

So in addition to the devastating loss of my past memories, I was unable to make any new memories! 

That’s when I finally decided I had to stop. I started looking into treatment alternatives, with a plan of starting a new medication while tapering myself off the ECT.

A couple of weeks before I finally stopped getting ECT, I was dealt another devastating blow. I discovered that even more of my long-term memory had been erased by ECT.

 It had almost completely wiped out my entire life, all the way back to my childhood. The most heartbreaking thing for me is that I barely even remember my own mother, who passed away 12 years ago. 

I was with her when she passed away, and I don’t remember it at all. I remember her only in a general way — no details of any time I spent with her.

I tried to file a malpractice suit against the negligent psychiatrist who did this to me, but I was unable to get an attorney to take my case.

Malpractice cases are very hard to win, unfortunately, and there has only been one successful case against ECT that I know of. That needs to change. These doctors need to be punished for their negligence.

The hospital where I received my ECT had a questionnaire to be filled out by my husband at every treatment, and he always voiced his concerns about the damage it was doing to my memory. But my doctor never seemed concerned about it. He never told me I should quit. 

Before I started ECT, the doctor told me that if I did have any memory loss, most of my memory would come back within 7 months after I stopped getting ECT.

That hasn’t happened. It has now been two years since I stopped getting ECT, and I still have an almost complete loss of memory for my entire life up until I ended this horrible “treatment.”

It took some time for my short-term memory to recover, but it has gotten better. So at least I am able to remember things that have happened since I stopped getting ECT. 

But it is really awful to live without your past memories. It’s like losing a part of your identity.

Yes, ECT does help some people, but is it worth the price of brain damage and decades of lost memories? I don’t think so!

For those of you out there with chronic, treatment-resistant depression like me, please don’t give up hope! You have other options besides ECT! 

After ECT, I started taking an MAOI, which I was afraid to try before because the side effects and drug interactions sounded so scary, and because so many other drugs hadn’t worked for me, I thought, why would an MAOI be any different?

I was just completely sick of the “medication merry-go-round.” But guess what – it worked amazingly well for me! I felt SO wonderful. I did have the side effect of severe insomnia, which was hard to deal with. 

Ultimately, I got to a point where sleep meds weren’t working anymore, and I had to quit the MAOI because I couldn’t sleep more than 2 or 3 hours a night. 

Of course, I was terrified about having to stop taking it because I had tried every other type of medication already.

 Luckily, I found a good psychiatrist who told me that often, an antidepressant that once worked well but “pooped out” will work again after you’ve been off it for a long time. 

So I went back on the last antidepressant that had worked well for me, and sure enough, it’s working again, just as well as it did years ago before it stopped working. Of course, I know it is going to stop working again at some point. But when that happens, I know I can go back to the MAOI if I need to (because I will have been off sleep medication for a long time, so my tolerance to the sleep meds will be gone and I will be able to deal with the insomnia again). 

I also know people who have responded very well to ketamine, so that’s something else to consider. It is helping a lot of people with treatment-resistant depression who haven’t responded to anything else.

And there are several other new medications being developed now that have different mechanisms of action than the antidepressants currently available, so hopefully, there will be new treatment options in the near future.

I would love to be able to get off antidepressant medications completely, but I don’t know if I will ever be able to do that. All of these medications have side effects – the one I’m on now makes me feel very tired all the time, so even though I’m sleeping much better than I was on the MAOI, I never feel like I’ve gotten enough sleep. 

But if you’ve ever experienced severe major depression, you know that dealing with medication side effects is much better than being depressed. So for now, I’m just trying to focus on the good things I still have in my life, and accept my limitations, even though it’s frustrating.

I have brain damage. In addition to losing the memory of most of my life, I still have other cognitive issues that I have no doubt were caused by the ECT. 

My short-term memory has gotten better, but it’s still not nearly as good as it was before the ECT. I also become mentally fatigued easily.

I have to take breaks from my work more often, and it takes me longer to do things that require a lot of thought.

I’m not as intelligent as I used to be. I recently had neuropsychological testing done that showed I have cognitive deficits.

ECT should be outlawed. It is barbaric – it has no place in modern medicine. And it is not even truly effective. The majority of patients relapse within a short period of time after ECT (6 months at the most, but more often within a matter of weeks, as in my case). I hope my story will reach people who are considering ECT and prevent them from destroying their lives. 

God Bless You, and good luck with your recovery.

ECT Story – Oliver

What I didn’t know until I was 39 is that I was brought up in a family affected by sexual abuse, both my parents had suffered childhood rape, and being the youngest I bore the brunt of sibling bullying, a ‘juvenile delinquent’ survivor of psychiatry from 1961 getting the usual Freudian ‘you’re jealous of your father and want to have sex with your mother’ plus told that I had strong homosexual tendencies, and fancied my first psychiatrist – I was 12 at the time – a classic case of transference – all of which made me uncooperative with psychiatrists – a big mistake!!

In 1971 I was in a grieving process and exhausted from running a summer play scheme, so they sectioned me, diagnosed catatonic depression, filled me up to the eyeballs with drugs, and when I didn’t ‘get better’ quick enough, without any choice or mention of the after-effects, they gave me ECT – I don’t know how many shocks, or whether, as is common practice, the equipment was obsolete, the staff untrained, the voltage totally arbitrary, because, it seems, when I started to make noises about suing, they conveniently lost my medical records.

Soon after ECT, I was visited in hospital by someone whose face and name I didn’t know, although, I learnt in conversation we’d shared a communal flat, eating drinking, talking together almost every day of the previous year, and when I was despatched back with no after-care to the family home where problems had arisen, I discovered my current address book, and frantically phoned some strange names in it, hoping their voices would bring back glimmers of recognition.

Soon after ECT I realised I could [not] remember all of the alphabet, nor my times table although I’d As in maths GCE O and A level, and I often stayed at home, irrationally fearing I’d be asked to recite them – for weeks I didn’t know first names of my parents, older siblings – at the first opportunity I moved to a town where almost no-one knew me, to avoid the embarrassment of social situations, and I still have cold sweats in large groups when I might be called upon to introduce people I’d known for years, but can’t remember their names – every day I need to muster the courage to venture forth so as not to be trapped in lonely isolation.

For 6 or so years after my finals, sat just before ECT, I thought I’d failed, until writing about something else, with a vague ps, I was sent my degree certificate, which was useful, no longer having to explain away 4 years of my life – I’ve got 13 GCEs, 4 top grade, but no professional qualifications – since ECT I’ve sat only 1 exam, and despite it being 70% project work and continual assessment, I struggled to just pass, well bottom of the class – my memory and impaired concentration can’t cope.

Some years after ECT, I was approached by a Social Security inspector, who asked if I knew a woman, and was surprised when I didn’t, but insisted she was the mother of my daughter – having no memory of her, I was easily persuaded by my now ex-wife to deny paternity – years later again, I met old friends, who said I’d had an affair, and she’d just had her womb scraped – but by then I’d thrown away all the papers, and am told I can’t now trace her, and she’s unlikely to want to trace me, who forgot being her father.

I can spend all afternoon in deep, personal conversation with one other person, then, the very next day in the street cut her or him dead, walk away from the smile of, to me, a total stranger, which has lost me untold friends (I didn’t know I did that until a kind person told me), and I’ve long since given up on my life aim of writing a novel – my mind can only extend to brief, disciplined sections (like this is written) – even though at college my published articles got a special mention in an award-winning Observer Mace student magazine.

For 29 years I’ve lived a moment to moment existence, every day coping with an emotional yo-yo – I’m liable to cry in company for no apparent reason, leaving my flat is a major expedition, and I rarely go beyond a round of known people and places, partly because explaining to those who don’t know me why I reacted in a particular way is just too complicated, and for a long time my sleep was rare – like those twitching frog’s legs, I suffer from muscular spasms that jerk me awake when I lie down and try to relax.

Like many ECT survivors, I suffer from fear of doctors and hospitals, and a few years ago I had uveitis, but kept putting off seeing my doctor, until two friends almost dragged me there, and then to hospital, where I was told, another week and there’d have been permanent damage and blindness – I’ve had at least three ‘mystery’ illnesses, and perhaps like others a brain scan would show the same results as a stroke or epileptic fit caused by ECT – but they are serious medical conditions, whilst ECT is supposed to be a treatment.

I’m told ECT is given to cure suicidal tendencies, which I find very peculiar, because before ECT I was never suicidal, and when a friend killed himself, I was horrified by the waste of life and talent – but 3 years after ECT I almost did it, countless crushed up pills and my wrists still bear the scars, and every week, almost every day, my thoughts turn to suicide, my urge to live is weak, dormant – and it’s odd that if ECT is such a life-saver, why is the death rate for those who’ve had it so much higher than the national average?

Childhood family holidays were all over Europe, I did a year’s VSO abroad, then hitchhiked across South Africa, and when at college in 1968 from Rome to Copenhagen and home, but since ECT I haven’t ventured outside the UK, I’m not sure I could manage – after ECT and the suicide attempt it helped induce, I spent a year in a halfway house, but then, realising I couldn’t cope alone, I was easy meat for recruitment to a group I fooled myself into believing was honourable, learning 19 years later it was a cult with a guru motivated by greed – where had gone the independent free spirit I once was?

ECT is given by professionals who admit they don’t know what it does, except to say it’s localised brain treatment, yet the human body is 70% or more water, an excellent conductor, so how can they guarantee it’s just local – in a recent survey of ECT survivors, over a third said it had damage them, so every day doctors are breaking their Hippocratic Oath ‘do no harm’ – to me ECT equals Every Cell Traumatised, I’ve been tortured in civilised fashion, and all the time have to struggle against the victim mentality it’s helped produce in me.

At a recent kinesiology session, I was taken through the experience of having ECT, to help heal it, and whilst she gently held my hand, it was as if I was ejected into the air, and I was left with the feeling of pure, unadulterated TERROR – I don’t own a TV, it affects me too much, and go to the cinema about once a year – Schindler’s List left me shattered for about a month, and Jurassic Park gave me nightmares and daymares for weeks, as if ECT had punched a hole in my aura, destroyed protection from outside influences.

But I’ve been lucky, unlike the hundreds who die during treatment, written off as ‘heart attack’, or are paralysed, or have given up, their minds destroyed, or are forced to agree to yet more shocks under threat of denial of psychiatric drugs they’ve been made addicts of – an American philosopher once wrote ‘Those who cannot remember the past are condemned to repeat it’, and I’ve spent weeks vainly trying to recall lost months, but can’t fill the gaps – I often feel I’m going round in circles, and about all that keeps me going is anger at what was done to me.

Oliver Swingler

Written 28th October 2000 – slightly edited September 2015

AND LATER …

Since writing and sharing my ECT survivors story, I got lots of support from others who’d been damaged by the mental health system, got out some of my anger manning a picket outside an ECT clinic (my picture was in the local newspaper!), had loads of counselling – about my dysfunctional family affected by sexual abuse, leaving the cult, near alcoholism and being an ex-offender, as well as psychiatric and ECT abuse. And, in the course of year, I tried 20 different forms of alternative therapy – using barter for those I couldn’t afford, and even found a sympathetic doctor who actually listened.

I still live moment-to-moment and have memory problems – but people pay big bucks to learn to live in now, when I can’t do anything else (!), and I’ve pieced together much of my life story, important names and dates, which is always nearby in case of panic attacks.

My anti-ECT stance helped me regain some of the campaigning zeal of my youth, and I’ve broadened out, been involved in anti-war and anti-fracking protests, as well as for a time joining a left/green choir, and writing two songs: ‘Bees are buzzing’ https://youtu.be/TwHZkY4UbfI and ‘Global warming’ http://youtu.be/s9g_Ucr4twQ both of which have been retweeted by hundreds of people to more than a million followers.

I still have problems in social situations, but I’ve two very good friends, have served on a committee or two, and even had the confidence to get back onto the dating scene, chatting away to others seeking friendship.

What I’m trying to get across is that it’s not easy, but it isn’t all bad news, there can be life after ECT, moments of joy as well as sorrow, and with my sights and expectations of myself set nice and low, the chance to have real self-respect knowing I tried, I did something I feel good about almost every day.

Best wishes,

Oliver

14th September 2015